This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Friday, February 4, 2011

Appointment Update

As promised, here's the update from our appointments this past week. On Monday, we saw the specialty pediatrician. I was looking forward to this appointment for quite some time. Up until now, we have not had a managing physician for Lydon. The pediatrician we were seeing has been wonderful to us but Lydon's continuing issues and need to maintain continuity of care has forced us to find someone who specializes in children with special needs. We were there for almost three hours. We discussed lots of things from the general to the detail-specific. First, we went over all of Lydons history and physical exam with one of the upper level interns. Then we met with the social worker and discussed some managment issues with his daily care like his therapies, equipment needs etc. She also asked me about what and if Jonathan and I had talked about what we would or wouldn't want done for Lydon in an emergency situation. Not your typical "well child" check up conversation! Then the doctor came in. He said that since he had gained a little length and weight(he's up to the 8th percentile) that he didnt feel it was necessary for us to see Endocrinology. Good news! One less specialist on the list. At least that's what I was thinking; but instead, we traded Endocrinology for Nephrology. The doc said that he had looked at Lydons vital signs past and present. He said he felt like it was safe to say that Ly is hypertensive and needs to be put on blood pressure meds. So, we have now been referred to a Nephrologist since kidney docs are the ones who take care of blood pressure issues in kiddos. Ive known for some time now that Lydons blood pressure was high. Ive mentioned it to several different docs before. Regardless, it has been overlooked or ignored. Im glad that it has finally caught the attention of the right person and is going to be treated. It is still upsetting to me that there is yet another problem and probably at least one new medicine to say nothing of the continued follow up exams and testing this diagnoses will bring us. He also talked to me about the issues with Lydons Igg(Immune system indicator). He had his nurse make some calls and got us in to see the Immunologist in about three weeks instead of three months.
We left there and walked over to the hospital to have some xrays done of Lydons tummy and see if it showed us what was going on there. The next morning we had a GI appt. I was very anxious about this appointment; because, in my opinion, Lydon has not been doing good GI wise. I'm not sure what happened to our GI doc since the last time we saw him. Brain aneurysm? Bi-polar event? I dont know? What I do know is that after our visit, it was clear that his recommendations were not what was right for Lydon. This type of issue/confrontation is always hard for me but the more it happens, the easier it becomes. Lydon is my priority...period! After all was said and done, we have an appointment to see a different physician who is familiar with Lydon and has a different approach. I am believing that this is going to be right person for us long term. Adding a new physician is one thing but I HATE having to change physicians! So, we will see the nephrologist about his blood pressure this coming Thursday, the new pedi next Monday for a follow up, then the new GI the next Monday. Our list of specialists keeps growing... it includes a Speciality Pedi,ENT, Gastroenterologist, Immunologist, Nephrologist, Neurologist, Pulmonologist/Sleep Specialist, a speech therapist, an occupational therapist and a physical therapist that all come at least once a week and we're a little late but we need to add a dentist and Opthamologist to that and probably some other "ologist" that Ive forgotten. Immunology, the Sleep specialist and Neurology/Mito Specialist appointments are all scheduled for March. Its a busy schedule thats for sure! I use to hope that we could find answers for things. Now, I dont know how much more I really want to know. I just hope that we can do whatever needs to be done in order to keep Lydon as strong, healthy and stable as possible. So, with that being said, we will continue doing what we are doing and trust that we are walking down the path that God has intended. As many of you know, we were hoping for a "snow storm" here in the Houston area today and that didnt happen but we made the best of it and did what we could to keep everybody happy and warm. Heres a pic of how the boys started off their day.

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